Books  |  Conference Proceedings  |  Email Discussion Lists  |  Journal Articles  |   Legislation Toolkits  | Videos and DVDs | Websites | Making information accessible 

Below are some starting points and a selection of resources relating to service user and carer involvement (SUCI).


Glenside Library has a range of books on SUCI and welcomes suggestions for new titles. 

Suggested keywords for searching the Library Catalogue: patient participation; carers

The Library has material on creating accessible information including:

  • Use of graphics for communicating with people with learning disabilities: 
    Pearpoint, J (2002) Hints for Graphic Facilitators  Toronto: Inclusion Press [Library shelfmark: 371.3 PEA]
    Wheatley, S (2007) The Graphic Kit  Leeds: Connect in the North [362.3078 WHE]
  • Creating accessible printed, electronic, audio and tactile information for people with sight problems:
    RNIB (2006) See it right: making information accessible for people with sight problems  2nd ed. London: Royal National Institute for the Blind [617.712 ROY]

Conference Proceedings

Farrell,C.(2006) Where's the patient's voice in health professional education. Report from the 1st International Conference organised by the Division of Health Care Communication, College of Health Disciplines, University of British Columbia. Vancouver: University of British Columbia [370.11 FAR]


PEPIN - Professional Education and Public Involvement: UK Network

This discussion forum is used to share information and promote discussion relevant to the inclusion of SU&C voices in professional education. 

There is also an archives of previous correspondence from the email discussion group.

Journal Articles

Scarborough, K. Broussine, E. Summers N. (2006) Taking control: university education helps people with learning disabilities 'make change happen', Learning Disability Practice 9 (9), 28-31

Recent publications on SU&C involvement in research are available on the Research page.

guide to finding journal articles is available. It suggests which databases and which search terms to use.

Legislation and Government Documents

Some of the key legislation and publications relating to SUCI:

Videos and DVDs

Glenside Library has a small but growing collection of videos and DVDs on SUCI.

Material on carers and young carers can be found by doing a Detailed search on the Library Catalogue using carers as a keyword and selecting Video or DVD as the item format.


The list of websites below is also available as a word document.
Most of these sites have been suggested by SU&C involved with the School of Health and Social Care.



“National advisory Group, funded by the Department of Health, which aims to promote and support active public involvement in NHS, public health and social care research.” Includes reports and guidelines.

NHS Centre for Involvement

Supports NHS organisations and staff to create services directly shaped by views of patients and the public.

Patient and Public Involvement

A specialist Library on the National Library for Health which “aims to support the implementation of patient, user, carer and public involvement in health care by providing access, in one location, to the best information which is available on the Web.” Search by care groups for service guidance.

Social Care Institute for Excellence (SCIE)

SCIE has a section on stakeholder participation


Princess Royal Trust for Carers

“Largest provider of comprehensive carers support services in the UK.”


Support for young carers. Includes discussion boards and chatroom

Mental Health

Art of Recovery

“The Art of Recovery is a Speak Up Somerset project to enable people with mental health problems to recover their place in the world. It is a project that looks at ways of creatively overcoming mental health problems. It also provides a platform to showcase the creative talents of people affected by mental distress.” 

MDF The BiPolar Organisation

Originally known as ‘The Manic Depression Fellowship’.
“User led charity working to enable people affected by bipolar disorder / manic depression to take control of their lives.

Mental Health Foundation

“Leading UK charity that provides information, carries out research, campaigns and works to improve services for anyone affected by mental health problems.” 

Mind | Bristol Mind

“Mind is the leading mental health charity in England and Wales. We work to create a better life for everyone with experience of mental distress.”


“Leading national mental health charity, works to help everyone affected by severe mental illness recover a better quality of life.”

Service User Research Group England (SURGE) 

“SURGE is the service user arm of the UK-Mental Health Research Network (MHRN). SURGE is a national network set up to support mental health service users and people from universities and NHS trusts, as they work together on mental health research.”

Learning Disabilities

Foundation for People with Learning Disabilities

“We promote the rights, quality of life and opportunities of people with learning disabilities and their families.”

British Institute of Learning Disabilities (BILD)

"We are committed to improving the quality of life for people with a learning disability." 

Audit of SUCI in services

Making information accessible

General notes from Social Care Institute for Excellence

Accessible information for:

Photosymbols is available at UWE

Examples of easy read guides including Our Health Our Care Our Say

Example of UWE Faculty Strategy for PPI/SUCI accessible minutes 

There is a section on disability information under Staff Development and Support.

Last updated: 14 Feb 2008